Nothing is helping

Having a terrible year.
Every single day i’m in 8/10 pain while i’m just lying in bed. Dark thoughts come to haunt me every few hours.
I started taking LDN, Gabapentin, and Cymbalta a few months ago as my new pain specialist has advised. No bad reactions, but nothing is improving.
I’m 25. I’ve had this for 10 years. It took away my prime years. I’ve never been able to aquire myself a degree. I’ve never worked even a part-time job. I grieve every day for the person I used to be. Sports and exercise were my getaway.
I’m scared to continue my life because I don’t want to bring children into a world of pain and illness. I also don’t know where my breaking point is, but I feel it’s not so far away from where I am now.
My husband is the only reason I keep on going, he has been for 7 years. Sometimes I feel like I should’ve let him go, so I could let myself go.
I don’t know how to help myself.
I have these thoughts daily.
I don’t remember the last day I wasn’t in tears.
I wish I could be numb, this pain is unbearable.
Am I dying? Because this does not feel like life.
Yet i still continue every day.

I won’t do anything stupid despite the constant thoughts, I just needed to rant and get all of this off my chest.
I hope this year has been kinder to everyone else <3

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Rosellas,
I am just so sorry that you are in this degree of pain and that it has gone on so long. Medications haven’t helped me either so I can’t recommend anything in that area. There are two resources that have been somewhat helpful to me though, and I’ll mention them even though and these might not mean a thing to you.
The first is Jon Kabat Zinn’s CD called ‘Mindfulness for Pain Relief’. Zinn has worked for many years with people who have chronic pain from injuries or illnesses.
The other resource is a book called ‘How to Be Sick’, by Toni Bernhard. Toni has lived with severe illness for twenty years now and manages to have a rewarding life despite being bedridden.
I hope you find what you need.

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I’m really sorry that you’re feeling this way. I really don’t know what to say so I’ll just get to the point. Only two things have proven to help my pain, acupuncture and marijuana. I don’t know how it works but acupuncture has “loosened up” many of my trigger points. It’s important to find a practitioner that uses an electric stimulator on the needles. And marijuana is the only effective muscle relaxer I’ve ever had. I don’t like the sensation of being high but I’ll smoke when my pain is bad and it helps immediately. I found a vape pen that’s half THC half CBD, it gives mild pain relief without being intoxicated.

Honestly my life isn’t great. But I do feel better than I did years ago. Small victories give me hope. A little less pain in one spot, a little more flexibility in another. Don’t just rely on conventional medicine. Keep searching, keep trying, don’t give up.

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My dear Rosellas, I wish I was sitting right next to you, with my arm around your shoulders. Where to start. Mmmmmm. I am very familiar with childhood trauma that lasted well into adulthood. That alone is awful to deal with. Add fibromyalgia to the mixture and …huh!!! I had Mononucleosis when I was 4 or 5. I looked up the type of fever you had, and I believe they are the same thing. I spend a lot of time laying on the couch or in bed. I even started to wear away the fabric , on the couch, where my head rests. Now I put a towel there to prevent it from getting worse. I have come close to taking my own life due to fibromyalgia. I won’t do it. But the psychological pain mixed with fibromyalgia symptoms is horrible. I told someone once that I was sad and depressed and desperate. He didn’t minimize my anguish. He described what I was, and am going through as suffering. He said we can tolerate a broken arm, a sore throat or even the loss of an arm or leg. But we don’t want to suffer. Do you have a trusted rheumatologist, neurologist or doctor? Have you, within the past 12 months, been tested for other things besides fibromyalgia? I just tested positive for an autoimmune disorder and possible rare neurological disorder. I’m also on LDN. It has helped some. I started on 1.0 mg. Now I’m up to 3.5mg. The highest dose for LDN is 4.5mg per my pain doctor. He said if I don’t have any improvement at that dose, I never will. He said 50% of fibromyalgia patients have improvement with LDN. When you are laying in bed with this awful pain, are you able to do anything? Are you able to listen to music, watch TV or talk on the phone. Is there one thing that helps you just a little bit? Do you have a dog or cat that will snuggle up next to you? My dog Max has been a lifesaver. He loves me on good day and bad days. I care. :hugs: Freedom

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Are you sure your diagnosis is correct… i guess that was the first thing that came to mind?

Learn self help in baby steps… oddly i get help from antiinflamatories… even supplement ones… i take low dose tramadol… as i am very sensitive to side effects… i almost child dose… so that just keeps the edge off the pain… so iuse self help items, like an acupressure pad, microcurrent unit, the trigger point handbook…this book teaches you to relieve those tight knotted areas…

Do you spend most the day in bed? Are you weak ?

With fibro patients we need to move…even if it hurts…but i read somewhere that if you are gonna move more, it should be done in extremely small increments , like a minute or a few…

I also use topical pain relievers for areas that are more intense…some of the good ones are disappearing from the marketplace though…pain erase was awesome…soothenol was intense but super helped my low back pain…a lot of people could not get past its intensity…but for that kind of pain relief , i sure did…

I always studied the alternative drs for ways to help myself.

You can do this…email me if you need ideas…

When i am in a bad flare i do take some time out and rest,
Sounds like you are staying in a flare… but most do not…

Set small goals and increase your activity some way…

Use heat and topicals, but not at the same time

Study trigger points, that book is written almost for the professionals , but you can look up an area of pain and go to that section…

You are young and you cannot give into it…mine got worse when i my kids were little…but that just made me fight for answers so i could be there for them…

Honestly , the things i take medically , help me maybe 50 per cent, slf help helps another 50… i weeded one afternoon this week…and had to rest the next day… but hey i got it done and ihave to push , because we lose strength so fast…

I do it, even knowing i will pay for it, our muscles pay us back :woman_shrugging:t2:

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Oh, my dear. I want you to know… I HEAR you. I feel you and I see you. I’m not going to tell you WHAT to do differently, but I am praying for you. For relief, for courage, for a way to make sense of your life as a person with a chronic condition. You’ve made a bold decision by coming here, being with your tribe, and getting it off your chest. We’re here to listen and let you know YOU ARE NOT ALONE.
With love and healing intentions,
Kelly

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Hi Chucky, I found marijuana helped me a lot. I didn’t use it every day but my Dr. at Kaiser said I can’t use it with my Tramadol. I weaned myself down to 1 tramadol pill per day. I just couldn’t go any lower than that. She knows I use marijuana because Kaiser makes me take a urine test every 6 months to make sure I’m “not selling the tramadol”. It’s so ridiculous I have been on
tram for at least 11 years (my rheumotologist gave it to me] and never became an addict. So tired of the pain and doctors

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Thank you for your support and suggestions. I’m a bit scared of acupuncture due to fear and sensitivities to needles, however I am most definitely considering CBD oil. Its extremely hard to get in Aus though and out of my price range. Hopefully one day I can get some help to be able to try it.
I have smoked and done edibles (with THC), but not for long and in super small quantities, so it didnt make much of a difference.
I’m super happy you’ve found some things that help you even if it is just mild relief.
I think of giving up every day… but I wont.
Thank you again :two_hearts:

Thank you for your kind words… it would be nice having someone who truly understands right beside me to talk to and support each other.
I have had a whole heap of tests done this year but I dont think any were for things other than the norm.
My LDN dose is at 2.5, and I’m working my way up slowly to the 4.5 mark. I’m working with a pain specialist, gp, and exercise physio at the moment. My pain specialist recommended Ketamine infusion as soon as she met me. Too high pain for too long she said. But of course I have to wait until mid next year for insurance to kick in. I am counting down the months even though I know that may not work either.
I do watch TV most days, and when I can, pick up my cross stitch. My wonderful kitten is attached to me at the hip so I always have company. Companion animals are so so important in my eyes, shes gotten me through some truly difficult times.

Thank you… it means a lot :two_hearts: I’m not here often, but its comforting knowing theres a safe space with people like me, who care x

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We do care, we have all been at the lows with this…some have slogged their way to better healthj

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